“I died 36 times in one year”

Sara Brautigam, of Kirk Sandall holds up an implantable loop recorder as she has a rare illness that causes her heart to stop beating and she is wanting to raise awareness of the condition. Picture: Andrew Roe

The incurable condition is an abnormal response by the autonomic nervous system to being in a upright position.

On standing up Sara can experience rapid palpitations that regularly result in her heart stopping and her blood pressure plummeting to a level that medics record as being clinically dead.

Along with the deadly heart condition Sara also has joint hypermobility syndrome (JHS) - an overlapping illness that means her joints are more prone to injury and dislocation. The combination of the two resulted in Sara visiting A&E 64 times in a one year. She said: “When I read my medical notes and saw the words clinically dead 36 times in a year and 64 visit to A&E it was strange.

“Obviously I knew it had happened a lot and I had been to hospital most weeks but actually sitting there and seeing it in black and white was shocking. I realised I’d been to hospital twice a week, every week and I just thought what sort of a life is this.

“There are signs before it happens I’ll feel dizzy or sick and really tired and then I feel as though I’m falling asleep. I can hear everything around me and feel as though I’m trying to shout but nothing is coming out.

“They say when you die your hearing is the last thing to go and that’s been my experience.

“After an attack I’ll wake up and my chest will be killing and I’m really tired.

Sara often sustains physical injuries from falling or inflicted by staff as a way to shock her back to life as CPR is not an option until her heart has refilled with blood.

“When it happens paramedics try and do anything to inflict pain to try and shock me into coming back to life so a lot of the time I’ll wake up with big bruises or one time they ripped an acrylic nail off but that still didn’t make me flinch.”

The canoeing enthusiast had made it through to the Great Britain squad and was training six days a week before her world was shattered.

After being diagnosed Sara was told it was no longer safe for her to canoe and her dreams of joining the navy were also left in tatters.

Even simple life goals such a getting a job and driving were affected.

“I definitely cried a lot and had to be put on anti-depressants just so I could sleep. I had 10 years of being out every weekend canoeing and being so active and it all came crashing down.

“I piled on the weight because I couldn’t exercise and was really upset.

“All my dreams came crashing down, I can’t even work at the minute because I would need a job that could be very flexible.

“Then I was told I couldn’t drive, it was like everything was being taken away from me.

“I lost a lot of friends, in fact I only have one friend from school. Everyone seemed to be too busy with their own lives to bother with me when I was diagnosed.”

But Sara is determined not to let her illness hold her back.

Since changing her medication Sara has noticed a significant improvement in her day to day life and is now looking forward to the future.

She is hoping to find a flexible job that will accommodate her illness and is dedicated to raising both awareness about PoTs and fundraising for PoTS UK.

She has even thrown herself into her new favourite past time - Burlesque Chair Dancing.

“Burlesque chair dancing has given me a new lease of life, I’ve made so many friends and everyone is so friendly and welcoming, I thought it might be a bit clique but it isn’t, it’s really helped with me confidence and I’m a lot happier.

“I didn’t think I’d be able to do anything like his with my illness but everyone looks out for me at the class, I’ve only past out once since I started.

“I’m determined not to let this beat me, joining the group has given me a life back, it might kill me but at least I’d die happy, for me I’d rather live to the full rather than live longer and be wrapped up in cotton wool it’s all about quality or life.”

* Diagnosis

PoTS is often misdiagnosed with 85 per cent of patients being told it’s all in their heads according to the PoTS UK charity - something Sara experienced first hand.

Sara, of Sutton Road, Kirk Sandall first started to notice problems when she was 12 after sustaining a back injury and bouts of fainting but doctors passed it off as a hormone imbalance.

As well as battling the debilitating illness Sara was dealt another devastating blow when she was 17 after the unexpected death of her father Graeme who had a heart attack aged 55.

Sara said: “It was such a shock I just kept saying my dad was fine I couldn’t believe it, even now I still expect him to walk through the door.

“At first they said my illness was all psychological because I’d lost my dad, and said it was just in my head.”

But after pushing for more tests and having a Implantable Loop Recorder fitted to monitor her heart activity along with an ECG and a tilt table test Sarah was finally diagnosed.

“In a way it was finally good to get the diagnosis but I was also really upset because before I knew that there was a glimmer of hope that I could be fixed and now I know this is what will kill me, there’s no cure,

“So it was really strange to think this will kill me, unless of course I get hit by a bus or something.”

* Charity event will raise money for PoTS UK.

Sarah has organised a charity event through her Burlesque Chair Dance classes along with teacher Donna to raise cash for PoTS UK

The ladies night event has a St Trinian’s School Disco theme and takes place on Saturday March 28, doors 7.30pm show starts 8pm until midnight.

Tickets £10 by contacting Donna on 07891292659 and anyone who wants to donate prizes for raffle can contact Donna.